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Everything posted by warmheart

Hi relicmom,
I'm currently on omeprazole 20 mg. twice a day, and still have heartburn pretty much 24/7 so I guess it'll probably have to be increased. It didn't matter for me whether it was covered because my primary care physician didn't want to prescribe PPIs before now; her reasoning was that if I thought I needed them I could get them OTC.
But then she gave me a script when she talked me into going for the barium swallow the other day; I was expecting a huge copay but it was just the standard drug copay--a nice surprise! She didn't have to get an authorization, either. The generic is a big horse capsule that's not easy to swallow (kind of ironic, when you think about it), but that's fine because I really don't have trouble getting it down.
Hugs,
warmheart

Hi Mando,
Glad to hear you've recovered! I'm glad you didn't have a stricture. As far as PPIs go, your doctor will probably tell you to keep taking them. I was told in the past that it was extremely important to take them forever, basically, and not to stop. I stopped when mine went over the counter and I couldn't afford to buy it, and my primary care doctor at the time put me on a different one that didn't work well at all for me. So I got discouraged and stopped taking PPIs altogether. Stupid.
You were probably there for an hour because most of that time you were waking up in the recovery room.
Hugs,
warmheart

Hi Lindsey,
Welcome to the forums! I also have limited scleroderma (with the minimum of skin involvement but I do have stumpy fat finger syndrome! :rolleyes: ). Ask all the questions you want--this is a great resource and there is always someone able to help.
Hugs,
warmheart :bye:

Hi Barbara,
I'm sorry you've had so much trouble with your esophagus! Luckily it turned out I don't have a stricture, so I don't have to have a dilatation. Food sticks in mine constantly and I have to force it down and keep it down, but it's almost never painful. As far as the endoscopy goes, the worst part about it was the anticipation. That and maybe when my throat started to numb from the lidocaine, but the nurse was wonderful and kept me calm. Actually I had my first endoscopy without sedation too but I was more scared this time because I knew it would end up taking longer and I didn't know what to expect. But even with all the biopsies it was still pretty short, or at least it seemed that way.
It just occurred to me today that the gastroenterologist guessed that my esophagus was narrowed from birth, but it looked normal on x-rays before I got scleroderma, and then today I realized that since I had scleroderma it was very obviously dilated--the classic scleroderma esophagus. On barium x-rays it looked like a big white water balloon. So what I'm wondering is whether scarring could cause that kind of narrowing. Does anybody know about this sort of thing?
Barbara, if you do have to have another dilatation I hope it goes smoothly--please keep us posted!
Hugs,
warmheart

P.S. Shelley, your husband has been through so much!!! I hope things keep getting better and better for him now that he's had his transplant. Your post on his philosophy of happiness should be required reading for everyone, everywhere--seriously! He must be an amazing person.
And as usual, as far as the barium swallow goes, you were right as usual. :) Fortunately the radiologist wasn't. :VeryHappy:
Hugs,
warmheart

Hi Mando, hi Shelley,
The more oxygen the better, if you ask me! :D
Mando, to answer your question, the radiologist found the supposed 6 or 7 inch stricture by doing a barium swallow. I looked up the length of the entire esophagus, and it's only about 10 inches! But the endoscopy didn't show any stricture, only that most of my esophagus is narrower than normal. It wasn't that way in the past, so I don't know what caused that, but it meant I didn't have to have it dilated after all. I don't mind my swallowing problems, I'm so used to them by now. I just wish at least they could keep me skinny! It doesn't seem very fair. :angry: But I should be grateful that I can keep my weight up.
I had a dilatation done once years ago just after I was diagnosed, just to see if it would help my swallowing (it didn't!). It was done in the hospital GI unit, but I sat on a chair with no medication at all, and the gastroenterologist took the dilator (it looked sort of like an enormous turkey baster) and plunged it really quickly down my esophagus and then up again. :barf: Probably the same way they did it 100 years ago. So it was interesting to hear that the way they prefer doing it these days is with a balloon dilator during an endoscopy.
Anyway, it looks like I do have Barrett's esophagus (no big surprise there), so the doctor today took a whole bunch of biopsies and I'm supposed to get the report in a week or two and then have an appt. with her.
I thought I could get away with not taking my PPIs even though I knew better. NOT!!! Hopefully someone else will read this and learn from my mistake.
Hugs,
warmheart

Thanks Kay-Kay and Jeannie,
Glad to hear the treatments worked for you both so well. It turns out I do have a stricture and it's 6 or 7 inches long. So tomorrow I have to go in for an endoscopy; can't have any sedation because I don't want to bother a friend to come into the city and drive me home. At least this way once it's over, it's over. My last endoscopy was many years ago now and it wasn't too bad as I recall (no nasty surprises and it went quickly), so I hope this one isn't too much more of a production.
Meanwhile my primary care physician told me not to eat anything that could get stuck and need to be fished out in the emergency department. Oh dear.
Hugs,
warmheart

Hi Amanda,
I'm sorry all this is happening to you! It does sound as though you've got great doctors, though, to figure out what's wrong and help you through it. And it's good that Janey could tell you about her experience and how well she's done.
You're in my thoughts!
Hugs,
warmheart

Hi Sara,
I'm so sorry you had so much pain with your EMG. I had one years ago when I was first being diagnosed. As I recall (and mine ended up lasting a couple of hours, so I recall pretty well), the one I had was very unpleasant but not all that painful per se. The first thing they had to do was warm me up for about half an hour so they could do the test (good old Raynaud's). Then they inserted a bunch of needles in my arms, legs, and also eventually on my chest (they were trying to find a neurological cause for my esophageal paralysis). It wasn't much more painful than the neurologist's pinpricks when he checked to see where I did and didn't have sensation.
Then the electric shocks began; I had pretty severe shoulder weakness that I'd never told anyone about but it showed up clearly on the EMG, so it ended up with two neurologists shocking me over and over, looking at the printout and arguing, and then doing it all over again. This went on and on--I don't think it was the typical experience! At one point one of them asked me, "You don't have any shoulder weakness, do you?" "Oh, no," I said. I would have said anything to get away from them! As I said, it was unpleasant but more in the way of when you accidentally bite down with a filling onto a bit of tinfoil--not so much painful as just a really nasty deep sensation.
Once again, so sorry your experience was so much worse!
Hugs,
warmheart :bye:

Hi everyone,
This is probably a pretty lame question, but recently I had repeat PFTs and was thrilled to hear that my DLCO is stable at 80% after a big drop in recent years. I knew that was great news, and means that I'm low risk for developing PAH. So I walked home making big plans for the next 50 years of my life, but pretty quickly realized that there was just one problem, which was that I'm still short of breath (SOB), have trouble with stairs, swollen feet, etc.
So here's my lame question: I know that it's very unlikely with a DLCO of 80% that the echo will turn up abnormal. Is there any possibility of that at all? And if not, is an echo really necessary? My sclero doctor wanted it, and I'll have it done regardless, but I'm just confused about how all that fits together. The other question I have about the echo is whether it's important to make sure they know why I'm there. Last time all they knew about me was that I was SOB, and they looked for heart valve disease. It was nice to know I had normal heart valves with only a bit of leakage in a couple of them (including my tricuspid valve...) but that wasn't why I was there! What should my primary care physician write on the referral? (I could have chosen to have it done through my rheumatologist at the sclero clinic; maybe I should have?)
Thank you!
Hugs,
warmheart

Thank you, Erika and Janey,
Yeah, I'm thrilled to have a DLCO of 80%! The first try was in the high 70s and I would have been very happy with that! Erika, 95% is awesome. Mine was over 100% at baseline (or sort of baseline, because by then I'd already had sclero for a few years).
I'm not concerned about SOB in itself; it is what it is, and I think at this point it's just up to me to keep building my lungs up to get the best out of them. It was the drop in DLCO combined with some medical history (long story) that was worrisome, because of the high risk of developing PAH. As my rheumatologist explained (and I already knew), it's fine if the DLCO stays where it is, but it was a big drop in a relatively short time, and if there's a trend of it dropping it would be cause for concern. No way to know which it was except by having repeat PFTs. He told my primary care physician that I have to have PFTs every year.
As far as the echo goes, it's basically to rule out PAH (I can't remember whether I'm supposed to have that annually too; I have to check on that.) But if they don't know that's the reason you're there (screening for PAH), why would they bother? :emoticon-bang-head:
Anyway, I'd be grateful to hear from someone who's navigated this. I'm going to see my primary care physician; what should I ask her to put down as the reason for the test? Last time the echo technician was the stern silent type, and I didn't dare open my mouth to try to say anything at all to her. I don't want this echo to be another waste of time. And I'm still not sure why I need an echo with an 80% DLCO, so maybe someone can explain? Thank you!
Hugs,
warmheart

Hi Pduckworth,
And welcome to the forums! Sorry it's taken me so long to answer; I just saw your post now. I'm sorry to hear about your diagnosis. I guess I don't technically have sine scleroderma because I do have some minimal skin involvement, at this point just a little skin thickening and tightness in my fingers. It all started for me about 15 years ago with stiff numb hands and joint pains (and also Raynaud's, looking back), but I refused to see a rheumatologist, which was pretty dumb in retrospect. Then about 10 years ago I suddenly started getting horrible heartburn 24/7, and within a few more months I suddenly had trouble swallowing. Turned out that my esophagus was (still is) paralyzed and dilated. And I also had weakness and numbness in my hands, and weak shoulders; I was pretty clumsy for a couple of years there. Anyway, to make a long story short, fast forward 10 years, I can eat anything and force it down (even big horse pills), and the weakness in my hands and shoulders is a lot better. It's really not much of an issue anymore. I finally saw a rheumatologist for the first time, who's a scleroderma specialist and he's great. Right now I'm in the middle of having my lungs re-evaluated, but I think everything will turn out OK. Everybody's different, but I feel very lucky to have done as well as this all these years. I just take PPIs for reflux, and Vitamin B12 because I can't absorb enough from food anymore. My fingers get swollen and tight, but hopefully that will be the extent of it.
Feel free to ask anything. But what about you? How were you diagnosed?
Slainte (in good health),
warmheart :bye:

Thanks again for the info about Croatia, Erika. So interesting! I have a neighbor from another Eastern European formerly Communist country. She goes back and forth, and over the years I've learned a lot from her about the system there--very different from ours.
What you said about life and the tightrope is so true. Guess the moral is just don't worry, be happy, right? And appreciate whatever degree of health we have while we have it, instead of wasting it by worrying about the unknowable future.
Hugs,
warmheart

My hair is long, thick, and very very dry. I use extra-strength smoothing serum and then a finishing creme, both from the drugstore. Wish I could find cheaper solutions! One of the hairdressers in the salon I go to has hair a lot like mine and hers looks gorgeous--she uses TONS of hair product and they tell me that's the secret.
Hugs,
warmheart

Hi Erika,
Thanks for the update. I was interested in knowing how you made out at the hospital, and also to hear about how things work in other countries. Were you admitted into the hospital overnight for the tests? Years ago that often would happen in the U.S., but not these days!
I'm sorry you didn't get any definitive answers, and hope that something gets resolved soon for your sake, whatever that turns out to be.
Your experience was the opposite of mine recently. I went to see the rheumatologist (and sclero specialist) for the first time. He read through what must have been a mountain of files, mostly years old now, before I got there. He sat down with me and took my history, examined me, and confirmed that I do have scleroderma, but barely as far as my skin is concerned. No more GI tests (I've had plenty already in the past). No more bloodwork. Nothing except PFTs and an echo, and then possibly a chest CT. Yippee! I realized at the end that I'd been expecting him to tell me I don't have scleroderma after all and I was not pleased to hear otherwise, but he is great and I was so happy not to be put through the medical wringer again.
I'm going for my repeat PFTs very soon and then the repeat echo, and I've got to admit I'm a little bit scared. It sort of feels like looking into a crystal ball of my future (how's that for overdramatic). Hopefully my DLCO won't have dropped any more than it has already, and then I can laugh myself out of the office!
Erika, your doctor sounds nice; good luck with everything from now on!
Hugs,
warmheart :)

Hi Scarlett,
Welcome to the Forums! I was a lurker for quite a while too and only came out of the shadows when I knew I had to ask for help. Which I got in spades, and I'm so very grateful.
I'm sorry too that you had to go through all that. My story was somewhat similar in that it took 10 years to see a rheumatologist at all. I'm not a doctor person, so I pretty much only saw my primary care physician. Fortunately (I guess) my diagnosis was clear-cut only because of obvious esophageal involvement, though I was never 100% sure of my facts until the diagnosis was confirmed by my rheumatologist, who's a sclero specialist.
BTW, there's no law that says you have to an "official" diagnosis of scleroderma in the chart in order to be treated and monitored, even if your rheumatologist is a sclero specialist. And as Sheryl said, there are good reasons to keep it vague.
Take care,
warmheart :bye:

Hi miocean,
That's great that all's going well. It must be nice to be losing fluid weight and not have to restrict your fluids anymore. Once all the followup appointments slow down, you'll have to figure out how to fill all your new free time!
Butterflies rock; for hard sticks it seems the best phlebotomists don't bother trying anything else. If you ask them to use a butterfly before the first stick, usually they're happy for the tip and the first stick is the last.
Congratulations!!! :emoticons-yes:
Hugs,
warmheart

Hi Gale,
Yes, it could be an infection. If it's still bothering you now, even if you don't see red streaks, please get off the computer right this minute and call your doctor's office (now, not tomorrow). If you can't reach somebody there, call the hospital emergency department. Better safe than sorry.
Please keep us posted!
Hugs,
warmheart

Hi all,
Something we all need to know (I didn't, and luckily no one lost precious time because of that)--with very few specific exceptions, people with autoimmune diseases are disqualified from being bone marrow donors. I'm not sure how I got approved to begin with. Fortunately I got a contact info update request from the donor registry very recently, just after I finally learned for a fact that I do have scleroderma and have had it for the past ten years. So I read the medical update info on the website and realized I'm disqualified from donating bone marrow. Sad, because I always hoped that some day I'd get the call and could help someone. But I'm glad it got straightened out in time, at least.
Hugs,
warmheart
P.S. Has anybody else noticed that the spell-check dictionary on this posting board doesn't recognize "scleroderma" as a word? Funny!

Hi Marissa,
And welcome! I've had limited (almost sine) scleroderma for 10 years now. It was a bit of a challenge adjusting over the first couple of years (shivering cold spells, swallowing problems, weakness in my arms and hands), but over time I did adjust and now all that feels pretty normal for me. Everybody's different, of course! My dentist had trouble prying my mouth open wide enough for a few years, but then the problem resolved itself. What kind of surgery are you having on your jaw? Hopefully it won't have to be too extensive.
Hugs,
warmheart